Newbie questions

Newbie, well, that sucks, right before christmas.

Pretty much standard protocol is the bone scan and CT scans, which will look for possible hot spots. At G7, that is unlikely. Please go up to the sticky thread called "just diagnosed?" at the top of the forum page, there is a lot of good info in there.

So, steps to take:

1. Breathe. Don't Panic.
2. Ask to have your biopsy slides sent to Johns Hopkins for a second opinion. Dr. Epstein's group at JH are the best, and what they say goes. about 30% of the time they will give a different Gleason score.
3. At G7, assuming it's confirmed, you're probably looking at treatment in the relatively near term-like in the next 6 months. Don't let your Urologist rush you into surgery in the next few weeks. You don't say where you are, please tell us, and we can guide you to where to go nearby for further consultations.

Generally, we suggest that newly diagnosed men consult with not only a surgeon (and, by definition, a urologist is a surgeon), but to radiation oncologists as well, to understand all the possible treatment options. There are numerous options that are curative for G7, and the keys are about what works for you as far as time, distance, potential side effects, you specific life situation, etc.

The most important thing is to focus and do your best to climb off the ledge. G7 is not the end of the world, not even close. You have research to do, learning to do, and a careful decision to make. We're here to help.

Welcome to HW, sorry you need to be here.

Couple of good posts for you already. As to questions, at the top of this forum are a couple of sticky threads with good basic information and a list of questions you might want to ask. Check those out.

Keep us updated on your progress and ask all the questions you want - we're here most days.
Andrew

Speaking from another 3 + 4 guy's perspective, I'd say you have already received excellent advice. After much research and paying very close attention to the wise sages on this forum I chose Brachy Therapy and have been greatly blessed ever since. I was doing long-distance walks the next day after a very tolerable procedure. A now dramatic reduction in "sauce" is the only SE that remains. I sincerely wish you well on what every treatment you chose and please keep us posted.

Insurance usually covers the cost of the Epstein review and if you have to pay out-of-pocket for the second opinion, I believe it's about $300. While I don't know your personal financial situation, in general I think that's one of the best deals in medicine today and I'd really encourage you to move forward on that.

Regarding your concerns about advanced cancer, I completely understand and in my case I totally sweated my scans. That said, at your PSA levels (mine were somewhat higher and I was fine) they're quite unlikely to show anything. For better or worse, this is a process that you need to go through. Hang in there...the "uncertain stage" is the most difficult part of the process.

Newbie - you've received some great advice so far. The only thing I can add is that you might want to get your prostate MRI'ed, as it could add important information in your decision making process. I say this because I didn't get an MRI prior to surgery and now wish I had. I just went through the motions and followed my doctor's orders. Would it have changed my choice of treatment? Possibly. But a BIG decision it is - and you could use all the data you can get your hands on as you learn more about your options. Informed patients are in a position to make the best decisions.

Best of luck to you.

Newbie, I think there is at least one guy here who was treated at Urology of Virginia, maybe he'll check in and give you some insights.

Another suggestion or two:

Get yourself a pocket folder to carry all your paper in. You'll need to get copies of everything..starting with your initial biopsy report. Add a spiral notebook and pen to jot down questions that come to mind, and to take notes at your appointments. Many of us took our spouses or other family members to all consultations to have a second pair of ears listening and taking notes.

Do as your urologist for local referrals to prostate radiaiton specialists. If he's not willing to do that, then you need a different urologist.

Don't forget to enjoy life.

If you can have someone go with you to your appointments and take notes. They will probably remember things you do not which I learned from my wife as she remembered things I did not. Between now and your next visit right down questions you think of read in a notebook. You may think you will remember them but you won't once you get in there and discussion starts. It's hard to know what is the correct treatment option. Biopsies often don't give you the whole picture of what is going on inside the prostate but just a snapshot of the area the biopsy needle encountered. An MRI can sometimes add a little clarity to that picture. My surgeon did an Coil MRI on me as he does on all his patients prior to surgery mainly for his planning. He did note the cancer in my left seminal vessel on the MRI but I elected to stay with surgery because I wanted to know what was in there, which can only be done on biopsy of the removed prostate. From what I was told the cure success rate is about the same for either surgery or radiation. Do your research and do what you feel is best for you. If you choose surgery from what I was able to find the surgeon should have done a minimum of 300 surgeries and preferably about 1000. Good luck and you will be fine.

Hi Tudpock18 and all responders to my quest for understanding!

I am so very grateful for all replies! My uro finally called me today and asked me to schedule scans. He appeared to be playing catchup as he did not know I had already scheduled my scans for 12/30 and he had not reviewed my biospy results in detail As he could tell me how many cores were taken or how many showed 3+4 results . During my BX procedure i counted everytime that biopsy "staple gun" hit my prostate. It was eight times. He said I had a twelve core biopsy? I dont understand the math here. 8 samples but a 12 core test result? What am i missing here? Is there double needle some where? I was more confused than ever after speaking to him. He said something about nine or ten samples had 3+4 results and cancer is on both sides of prostate with that result. I know I counted correctly 8 samples based on the hearing and feeling every time a sample was taken so how does that equal a 12 sample BX ? I have taken the deep breathe and am focusing on what these folks are saying but I am skeptical. The uro group I went to seems over booked as it took two months to get initial consult and another month to get biopsy. The waiting room is packed to capacity when you arrive and I waited a more than an hour and half beyond my appointment time for first appointment and 3 hours past appointment time for BX appointment. The doctor went on vacation after my 12/9 BX and did not hear back from him until today. I called a week after BX many times and after two days of several calls I finally reached a PA in his office that told me i was cancer positive and gave me Some quick outcomes . Less than a 10 minute call. I dont really understand! TodaYS call from uro was not much better less than 10 minute conversation. Is this kind of service the norm? I am not complaining here just trying to understand if this is a Service norm so i can set my expectations correctly.

Thank you to all

Newbie2pc

That is discouraging. Even with the holiday rush going on, that seems inappropriate. A 12 core biopsy is standard pretty much everywhere. It is really important that you get a hard copy of your biopsy report. When you get it, you can copy it here and we'll help you interpret it.

Like others have said, if you are not completely comfortable with your doctor, his office, etc, you are free to move somewhere else.

Hello all,

I have to say you guys are awesome in helping me understand my situation!

One thing That keeps running thru my mind is that I brought this on myself.

I went to a doctor to get on a medical weight program and felt it was the safest way to lose a large amount of weight. I was 6'2" 290 lbs and felt physically horrible, no energy low concentration and some ED. The doctor encouraged me to try testosterone replacement therapy alongside phetermine for appetite suppression. My T level was in the 450 range and my psa was 1.6. I did great on this treatment losing 70lbs in six months . I incorporated a paleo diet and weight lifting 3times a week along with brisk walking almost daily.

It was around the 5 and 1/2 month mark when i began having prostate symptoms. At my six month Regular doctor checkup is when I discovered my psa# had more than doubled to 4.2 and my T levels were too high. We immediately stopped T injections in 9/19 and I scheduled my first consult with uro group. It took two months to get a uro consult and my T levelS were still high around 1200. My weight loss doctor had been trying to optimize the T level between 900 to 1100. I also noticed my hair was thinning due to higher DHT levels which is a byproduct of T treatments. I was never really comfortable with the TRT idea but the doctor reassured me it was safe. By the time i received my BX dec 9th my PSA had dropped back to 2.2. I feel like the TRT therapy caused the enlarged prostate and probably fueled the PS cancer growth.

Now I am anguishing over my weight loss decisions and feel I brought this PC cancer on myself. I was able to clooect my psa # s from 2015 to date and they were all between 1.6 and 2.2 for 2015 to 2018. I am not so worried for myself but I have a wife and two beautiful teen kids that I have put at risk thru my own stupidity and lack of understanding of The risks with TRT

I am thinking that I may need to seek out some professional mental help.
I feel this forum has helped me keep my hope alive for a cure or at least more time above ground than most other types of cancer.
Thank you all and wishing everyone a happy new year and cancer free!

I will post again when i get my results of the scans on 12/30.

Newbie:
At this point, you're still in the early phases of learning--and playing the mind game is pretty common. Heck, I came in with a huge family history of prostate problems, including my father who died of advanced PC about 10 years before my diagnosis. So, I get it.

You'll get your scans on Monday, you'll probably get the results in a few days. Hopefully you'll have a serious consultation with your Uro soon to go through everything. Don't forget to get hard copies of everything.

Odds are that your scans will show exactly nothing--except for early arthritis or old broken bones. After that, you need to move towards getting the other consultations you'll need.

Keep us posted--you're not alone.

I fully agree with JNF...you didn't give yourself cancer with a year or TRT. There have also been discussions here that the amount of testosterone you have doesn't affect PCa--it's an on/off thing. For example, guys that have ADT as part of their treatment have their testosterone completely turned off to "castrate level." (I was one of those fun guys.) Until it gets to that level (T<20), the treatment doesn't work.

Now there is a chance that the TRT raised your PSA--but there's a lot of things that raise PSA. And increased PSA doesn't necessarily mean PCa.

Heart disease is the leading cause of death in the US, not cancer. (And that's all cancers--not just prostate cancer.) The fact that you lost 70 pounds has a very significant benefit for your ongoing health. I'm not a doctor, but I suspect that you did a lot more good for your overall health with your recent weight loss program than anything bad.